On the Road.......

My wife has informed me that I have NOT done a good job of keeping the blog updated on my progress. I apologize for my neglect and promise I will do better in the future. I am home and working on my recovery. I am up to about four small walks a day as well as some other exercises which help with the range of motion in my arms and back. My mom has been keeping an eagle eye on me while Kellie is back at work. They are both making sure I stick to my low sodium diet. It's taking a little getting used too. I figure now is as good a time as any to work on a new and improved diet. My appetite is on it's way back as I am experiencing bouts of hunger throughout the day. This is a much better experience than my intestinal issues of last week. All in all I am feeling pretty good. I'm trying to take it slow and steady. I'm learning that this is a marathon and not a sprint. We are extremely thankful for our good fortune this Thanksgiving and wish all of you a great holiday. It's now back for another power nap.

Home is Where My Butt Is

Kellie and I have finally arrived home and we are thrilled. The airport wasn't too bad...at least for me. I was in a wheelchair while my tiny wife carried all our bags through the Minneapolis and Seattle airports. She's pretty tough! I'm still a little bit in a fog so I will keep this short but again wanted to thank you all for caring so much about myself and my my family. Take care and we'll keep you updated on the recovery ahead.....there's a lot more work to do and I"m definitely up for the challenge. Love you to you all.

Steve and Kellie

Steve leaving the hospital with his heart pillow......

Thanks for the awesome duds Brian! They have come in handy!

Released from jail

Hi all -
Steve was released from the hospital yesterday at about 2pm MN time. We came straight to the hotel so that he could take a nap! He has been diligently doing his walks and breathing exercises like a good boy. We all ate at the Canadian Honker AGAIN last night because it was close to the hotel and really cold outside. It is amazing how much his appetite has shrunk and changed. He didn't even want the fries that came with his dinner cause they weren't appetizing to him! What a difference having your chest cracked makes!

Steve slept fairly well last night and only woke up a couple of times to get some more medicine and figure out what day it is....still having some issues with that. He was hoping to get on the computer and write you all himself but his brain is still a little fuzzy with spelling and passwords so it was pretty frustrating for him. Hopefully in the next few days that will pass and he can be more communicative on here himself.

Today we met with the genetic counselors to get the ball rolling on getting a genetic test to determine which gene Steve has a mutation in that caused his disease. He has a more rare form of HCM but they gave him about an 80% chance of finding the mutation - which is great. Once they find it then the rest of the family can get tested fairly cheaply so we can rule out Jodi and Jeff and now Katelyn. Plus it means when we have kids they can get tested too and we can rule out all of the echocardiograms if our little ones don't carry the mutation.

We have changed our reservation so that we will be heading back to Seattle tomorrow. We decided that sticking around the hotel another day just wasn't worth the extra rest he might get because we both just want to be HOME! So we'll be in Seattle by dinner time tomorrow and hugging Toby sooner that we thought! I will hopefully have more time to return all of your wonderful calls and texts this weekend.

Thanks for keeping up and we'll be back soon!

Steve loves chicken broth!

Yay for Steve!

Tuesday was and awesome day I have to say. He hasn't looked and felt this good since last Thursday. His stomach issues resolved for the most part and he took 10 walks today - more than double the amount he took yesterday. He is doing so much better and we are all relieved! They took him off of the liquid diet by dinner time so he had his first solid food Tuesday night - lasagna! In true Steve form he no longer passed up dessert tonight either. The nurse actually came in and gave Steve a liquid diet dinner that could serve as his snack until his lasagna arrived and it was his first flavorful meal in a while. I couldn't resist taking a picture of Steve VERY MUCH enjoying his chicken broth!

Steve is on track to be released Wednesday and we are really excited. He is ready to get out of the hospital and get home to Toby. He started reading again today and watching tv and missing Seattle. They gave him an echocardiogram today too and they said it looked great. The surgery was successful as far as they can tell but the true test will be when he exercises. Once again they keep telling us that he NEEDED the surgery to survive - especially after seeing all the scar tissue in his heart that was removed. So thank goodness for Mayo once again. The people here and all the nurses are just fantastic. I can't say enough good things about Mayo and St. Mary's. MN is another issue - freaking cold here!

Hopefully when he gets out Wednesday he'll be more awake and would welcome texts and phone calls - although I can't promise he'll make much sense. He has been entertainingly confused today and mentioned that they shouldn't ever give him "carnotics" again - aka narcotics. Man I love him.

I'll let you know when he is released! Thanks so much again for your comments. We have loved reading them and hopefully Steve can take over the blog soon too.....

Here are some pictures as promised. A few from the ICU and one from his first walk!

Back on track!

After a terrible day and night yesterday Steve is progressing really well and doing awesome. He decided in his sleep that he didn't like the tube down his throat so he decided to rip it out! way to go Steve! He felt much better with it out of his nose and his intestines have "woken up" so he is feeling much better. I should have known something was wrong yesterday when he turned down ice cream AND chocolate pudding!

We have already done two long walks today and will continue to keep moving throughout the day - the doctors say that is what will get him out of jail sooner. He also had his pace-maker wires removed and will head down for an echocardiogram later today to see how the surgery went. We think he is back on track to be released tomorrow but we'll have to wait and see. He feels soooo much better today though and although he still isn't sure what day it is - he is more awake.

Thanks again for keeping up with us. I am giving Steve your messages and well wishes and it definitely brings a smile to his face!

Setbacks....

In the interest of keeping everyone updated we have had a setback. Steve has been unable to digest food and has been really uncomfortable. They decided to x-ray him and found that part of his intestines are still asleep from the anesthesia so he isn't processing food. They have to put him back on an IV and stick a tube down his nose and throat to releave some of the pressure on his intestines. It is a very unpleasant procedure but one that should help him feel much better. Unfortunately it means he'll be in the hospital probably until Thursday now - or until he can digest food properly. Good news is that his intestines should "wake up" and they shouldn't have to do surgery to fix the issue.

On a lighter note he is able to get out of bed pretty much by himself and is actually walking pretty fast when he takes walks. So he is making good progress with his healing - just having some other issues that make him uncomfortable. Hopefully this isn't TMI.......

The family is just hanging out and letting him sleep today. Each time he gets up it exhausts him so he needs a nap everytime he walks or goes for a test. My dad left this morning and the Howard's have planned to leave tomorrow but might have to postpone if Steve doesn't seem to be getting better. We are all ready to have a few more choices for eating....the "Canadian Honker" restaurant isn't feeling the economic crunch because we are eating there all the time. I think there are still a few menu items we haven't had......SOOOOO ready to be home. I had to go to a "nutrition" class today too to find out all the stuff that is currently in our house that Steve can't have. Surprising how bad some of the "good for you" stuff can be.

Anyway. Rambling now.....
I'll keep up the updates and will hope for some good news once they can get his NG tube down.
Pray it goes smoothely next time please!

Day 4 - a day of major progress

Yesterday we had a day of firsts. First time I have EVER seen Steve eat tomatoe soup - I almost passed out witnessing it! He is eating a little more and feeling a little better. He has had some nausea and needs to get things moving out (if you get my drift) before they'll let him go. He took a very short walk yesterday and got his first bath - washrag in the bed!

He slept really well last night and has already taken the first of his five long walks today - down the hall and back. When I got here this morning they had already removed his catheter so his only tube left is the oxygen. They are weaning him off of the oxygen today and Nurse Kellie has to be more dilligent about getting him to do his breathing exercises...... He will get to shower today which will make him feel more normal for sure AND we hooked him up with a massage to help with his back pain. After open heart surgery your back hurts pretty bad from stretching out the sternum when the ribs push into the spine. So the massage is apparently a blessing.

Thank you all for following the blog and leaving such wonderful messages. I am updating him regularly whenever I can sneak away and read it. The flowers and balloons have been awesome too (on a side note - the flowers are beautiful but he can't have them in his room so please just send your healing thoughts instead - we do appreciate them though and have them in the hotel).

I will try and sneak in another post with some pictures tonight if he is napping good at some point.

love to you all.

Day 3 - on to quieter pastures....

Day three started out MUCH better than Day two. We woke early to a fresh blanket of snow and Steve slept really well last night and was much more "with it" this morning. We got good news yesterday from his surgeon that all of the scar tissue they were worried about was in the muscle they removed - so he will not need to have a defibrillator put in before we leave. WHEW!

Today Steve is losing tubes left and right. They removed some of the probes in his heart this morning as well as all of IV tubes from his neck that are now going into an IV line in his hand. So he is tube free around his head (and for those of you who know - they NEVER had to use the external pacer!!!!). At around 10am this morning they also took out his chest tubes which were draining excess fluid from his chest cavity. They were one of the main things making him so uncomfortable so it was nice to have them out - gross - but nice.

Around lunch time we were supposed to get him up and walking but he got moved out of the ICU and into his own room instead. Thank goodness! We have had an interesting roommate since the surgery - a 66 year old man who hasn't aged well...... He has kept us entertained (and awake unfortunately) by talking about the "ten" Novocaine shots he got in his private parts (which according to him "might has well have been cut off for how numb they were), by making requests for chili and then bacon and sausage for breakfast. Our wonderful nurse Marsha was sure to let him know that they don't tend to give bacon and sausage to heart patients! He was hard of hearing and a fairly LOUD fellow......needless to say it is blissfully quiet in the new room.

Steve is still enjoying ginger ail and has only been able to eat jello so far. Hopefully he'll get more of an appetite as they ween him off his narcotic drip. He will be losing his precious button of bliss by the end of the day and be taking most of his meds orally. Baby steps!

I spoke to a doctor who works with his surgeon this morning and he assured us that Steve was on track to be released on Tuesday (shocked the heck out of me). So he will hopefully be in his own comfortable bed with nurse Kellie starting Tuesday morning.

I apologize for not posting any pictures but I haven't had a chance to upload any yet. I am hoping to get a picture of his first steps later today when he gets some strength back after moving rooms. I sort of feel like a new mom - waiting anxiously for those first steps and I can't promise I won't cry and take lots of pictures just like one! Once he starts walking he will be able to get rid of the catheter and use the restroom on his own. Each day is bringing him closer to Independence and feeling better!

Thanks for all of the wonderful comments and well wishes. We are thinking of you all and grateful for your support. I wasn't able to have my phone on in the ICU and haven't wanted to leave him much so I haven't had my phone on. I will try and gradually get back to all of you over the next few days as he starts to get closer to being released.
k

Day 2

Steve is "breaking records" according to the docs. They removed his breathing tube within a couple of hours of entering the ICU which was "fast" according to the nurse. He was already talking yesterday afternoon but not much. He has said some pretty drug-induced things that aren't appropriate for the blog but can be shared later.....His new favorite thing on the planet (besides constantly holding my hand :) ) is gingerail. He said it tastes like "liquid gold" and can't get enough! When they finally made me leave last night he was sleeping pretty well and not in too much pain.

Last night went fairly well for the newly heart-thin Steve.....unfortunately they told the dude that was doped up to keep track of when he needed more pain meds so he fell down on the job. When I arrived early this morning he was in a lot of pain but is doing much better now that he has been "pressing his button" for pain meds on a regular basis. We were laughing that they'd give him the responsibility when he ain't that with it ya know????

He looks really good which makes all of us relieved and happy - and more importantly the docs are happy with his progress. He has color and is talking quite a bit when he can. He had a fever yesterday but it is at a manageable level now. We were hoping to have him moved out of the ICU today but there aren't any beds available - so he'll get another night with round-the-clock care. poor thing! (and we are happy with another night of constant care).

I'll keep you as up to date as possible and maybe post a pic of him when he takes his first steps (which are supposed to be later today - yikes!) if he'll let me.
love to you all,
k

Successful Surgery

To all -
Steve surgery is now finished and according to the surgeon it went really well. The surgery only took and hour and 20 minutes and they updated us the entire time. Mayo is fantastic and our surgeon Joseph (future name of our first born son!) is very talented. We are now waiting to see him once he has been transferred to the ICU. So: the take home message is that he survived the surgery and his heart is functioning well for probably the first time in his life. Thank the Lord. They did find more scar tissue in his heart than they were expecting so they are consulting with his awesome cardiologist to determine if he now needs to have a defibrilator implanted before we leave Mayo.
I'll keep you posted after I see him - but the hard part (at least for the family) is over. Thank you all so much for your love and prayers. We are the luckiest people in the world to have friends like you keeping us in your thoughts. All your praying power paid off. THANK YOU. love to all of you.

It's On

All systems are go. Kellie and I met with our surgeon today and we should be "first up" in the morning. My current focus is on what I can do to recover as fast as I can. I'm relying on all of your thoughts and prayers to pull me through the surgery, with the help of the doctors(of course). You are all wonderful and it goes without saying how much I love you guys and gals. I do need to give one shout out to my wife. Her strength and love through this entire ordeal continually amazes me. Why she married me I'll never know. One more shout out to my dog....Toby you are the best and I can't wait to have you snuggled next to me during my recovery.

Thank you all. With a LARGE amount of love,

Steve & Kellie

On Our Way

Kellie and I leave for the beautiful metropolis of Rochester, MN today. Oddly enough I'm more anxious about the flight than the surgery. I'm only capable of worrying about one thing at a time. So much for multi-tasking. Tomorrow I will have my blood drawn and then we will meet with the surgeon to go over any last minute details. We'll keep you updated if anything news worthy happens. If not we'll talk to you all following the surgery.

Again thanks for all the thoughts and prayers.

Steve

Thanks

To all,

I wanted to thank all of you that have sent well wishes and prayers our way. Please know that they do not go unnoticed. I feel lucky to have connected with all of you at some point in my life. My plan is to continue with those connections for the next fifty or so years! I believe that this is the beginning of an exciting new life for Kellie and myself. All of your thoughts and prayers are extremely important in this step.

Thanks again and know that my family wishes all of you health and happiness.

Take care everyone,

Steve

Regular Heart vs. HCM Heart

A photo of a healthy heart compared to one with Hypertrophic Cardiomyopathy. In my surgery the surgeon will thin out the thick wall you see on the picture to the right. This should allow my body to receive the proper amount of blood helping me to breath easier, have more energy and reduce any extra risk of cardiac arrest. These are all good things that I am very excited about. Just dropping a little knowledge on all y'all.

Take it easy,

Steve

13 Days To Go

Friends,

For those of you that don't know three years ago I was diagnosed with Hypertrophic Obstructive Cardiomyopathy (HOCM) and a Bicuspid Aortic valve, both are congenital heart defects. We have tried various medications but they have not worked in preventing the symptoms that keep me from living a healthy, active lifestyle. In October Kellie and I visited the Mayo Clinic in Rochester, MN and met with one of the world experts in HOCM where it was decided that I should undergo an operation to fix my condition called a Surgical Myectomy. The surgeon will cut through my sternum and then go into the aortic valve, from there he will thin out the left vetrical wall of my heart along the septum. This procedue will occur on November 14th at Mayo. I will then spend the next 5-7 days in the hospital. After that Kellie and I will fly home where I will continue my recovery.

Maybe I'm an idiot but I'm not feeling too anxious at the moment. I'm sure as the surgery nears I will start to feel a bit more edgy. Thank you all for the well wishes and thoughts. They mean the world to both Kellie and myself.

This blog will be posted to keep all my friends and family updated on the progress of the surgery as well as my recovery.

If you are interested in learning more about HCM I have copied a link below.

http://www.mayoclinic.com/health/hypertrophic-cardiomyopathy/DS00948

Steve